A French study collected data from 103 adults with a slowly progressive neuromuscular disease who had been using non-invasive ventilation for at least six months, using questionnaires to gain a better understanding of their feelings and experience of telemedicine for respiratory monitoring.
Concerning teleconsultation :
- 73.8% of patients were in favour, 26.2% opposed.
- 61.2% of participants had already tried it (with 90.5% satisfaction).
- 48.5% of patients would prefer a majority of face-to-face consultations, with occasional teleconsultations.
- Being in favour of teleconsultation was significantly associated with having a dystrophinopathy. There was a tendency for patients to be younger.
- the main benefit reported by patients was the reduction in travel constraints (89%), and the main obstacle was the absence of a clinical examination (55%).
Concerning telemonitoring:
- 69.9% of patients were in favour, 30.1% were not.
- Being in favour was significantly associated with a journey time of more than an hour to the place of monitoring and with having the feeling of insufficient monitoring.
- The need for data feedback was reported by patients.
These results show that telemedicine represents an interesting tool for monitoring non-invasive ventilation in patients with neuromuscular diseases, which should not be imposed but discussed with the patient on the basis of specific situations, in order to limit journeys, reduce delays and cut healthcare costs.
